Thirty years ago, we would regularly take the kids to Old Sturbridge Village in Massachusetts for the weekend where we would always have at least one meal at the Publick House. On one such night, Rich was carrying Emily, who was not yet three, through the sandy parking lot and pointed to a full moon. “That’s Daddy’s moon. “ As he told her that, his legs slipped out from under him and he fell, protecting Emily from the fall. She sat up and said “Daddy’s moon fall down!” From that point forward, every full moon was identified by her as “daddysmoonfalldown.”
We were lucky last weekend to be able to revisit OSV and the Publick House with friends. Rich was given the all-clear by his team of doctors and we knew that going to a familiar venue would allow us a relaxing weekend away without the pressure to see and do everything. We would also once more go to the Salem Cross Inn and enjoy their fireside feast. Sharing it all with Arlene and Kevin would allow us to see it all with fresh eyes and we knew we had a team to lean on if we needed help. We are blessed with our friends.
The weekend was all we could wish for. Good friends, good food, good fun. The village was blanketed in snow but the skies were clear and bright. Peacefulness was everywhere. After dinner, as we returned to our lodging at the historic Oliver Wight House, there was a full moon. Memories made us smile.
We came back home tired but happy.
We knew Rich had probably expended more energy than he should have, but would spend the week to come resting and gathering strength.
But by Friday: daddysmoonfalldown. During the day, Rich’s breathing became ominously loud. The symphony of crackling, whistling and wheezing had begun again. We’d been told increase the prednisone if there was a negative change in his breathing as we weaned from this drug we so longed to be rid of. Reluctantly, we increased it and hoped for a positive result. Saturday morning we knew we were off to the emergency room once again.
Thankfully, the myriad of tests showed no sign of pneumonia. The CT scan that is done is much improved since last month. The xray shows some lung involvement but not enough to point to pneumonia. Worst case scenario, this could be just a blip in the PCP recuperation. We’re told, after more tests, that this time the culprit was the respiratory syncytial virus or RSV. Basically a viral form of the common cold, this morphs into a more serious disease in the very young and those, like Rich, who are immunocompromised, leading to bronchitis or pneumonia.
As Rich does things outside the norm, instead of cold symptoms, he jumps right to the asthmatic end of the spectrum which allows the doctors to throw a few antibiotics into the mix of increased prednisone… just to be on the safe side.
We spend a full twenty-four hours in the emergency room. At one point, he is to be moved into the hallway for what is known as “holding”… the status prior to getting admitted and assigned a hospital room. We ask the nurse to please double check on that move before taking us into the general area and we find we’re to stay in our ER room. We settle in for the night. Rich on the gurney and I’m on the floor, wrapped in my cloak but tired enough for it to be comfortable. The machines monitoring his vitals begin beeping again… his oxygen levels are dropping. The supplemental O2 he is receiving through the cannula is not enough. I request a mask instead of the cannula from the nurse in the hallway, but am told that it’s probably not necessary… until she sees that his levels have dropped to 82 while receiving oxygen. A mask is now set up. We settle back down but those pesky O2 numbers keep hovering in the danger zone. It’s decided to use a BiPap machine instead of the mask. This machine will allow Rich’s lungs to relax and let the positive pressure on both the intake and outtake be done by the machine itself. This brings his levels up to the optimum 100%.
There is one uncomfortable moment when the doctor discusses what our wishes are if his breathing should get worse… do we want intubation? While it’s always recommended to have health directives, the details of the moment really dictate what your wishes would be. How is it possible to predetermine what your decision would be for every scenario? Thankfully, although we approve any possible intubation during this hospitalization, it does give you pause and we’re glad that it doesn’t need to be discussed or implemented again.
Due to the contagious nature of Rich’s illness, we’re moved to a more isolated in a private room in the holding area of the ER. This one affords me the luxury of sleeping in a recliner instead of on tile. We spend the night and most of Sunday there before we’re finally brought up to 4Monti where we once more have a private room. Certain precautions need to be followed to keep the spread of this virus within the hospital. Handwashing, masks, and what is called “droplet” protocol to protect caregivers who come in contact with Rich.
Because pneumonia has not yet developed, our stay here should be limited to a few days. The BiPap is no longer needed, the mask is also relegated to the discontinued list. Cannula will provide enough oxygen. The plan is now to continue the antibiotics to forestall any other opportunistic bacteria from taking hold. Prednisone, back to the levels from a month ago, will be the protocol to battle the RSV. Our despised but necessary medication will be with us for a few more months.
Once Rich’s breathing is able to hold its own without supplementation, we’ll be able to continue the recuperation at home.
Our pulmonary doctor says it best, “We’ll get you back to Massachusetts in no time.” Symbolically where we want to be… sharing and making memories with friends and family. We’ve had to take some proverbial rainchecks as some plans were put on hold… but not for long!